Because He Lives

Anna exploring the Kampala craft markets.

Furlough seems like ages ago! We had a great time in Scotland for the month of June visiting our supporting churches and catching up with many of you. There were just too many “thank you’s” to write cards to all those who blessed us along the way.  Please accept our heartfelt thanks for all those who hosted and fed us, blessed us financially and spiritually and in many other ways. We returned to Uganda encouraged even though tired.  We had the pleasure of Anna McNeil from Dunoon fly back to Uganda with us for three weeks of her school holidays.  She came to explore the work of MAF and spend time in the hanger with Andy as well as enjoying time in Uganda. Abi was so happy to have an “older sister” about the house and we shared many happy memories including an early morning MAF flight over Africa – my first one since I arrived!  

Since returning to Uganda it has been a whirlwind of activity and emotions.  Forgive my internet silence but I have needed some time to process and withdraw and just rest.  Many of you are aware of the baby Darius who comes to our house every day with his mother Joyce.  Darius is now 8 months old and we were aware he had hearing and visual problems. Since he was three months old we have explored the medical expertise in Uganda to see how we can help him.   I had wanted to take them to Kenya to see if we could help his hearing to allow him to communicate but I had left the finances with God as we could not afford it.  God moved an anonymous donor in the UK and a dear friend to give financially to us. 

First time on a plane for these two!

Joyce wanted to go and so we flew to Kenya beginning of August.  Nothing was easy and trying to get Darius a birth certificate in time was the first challenge of many.  Gaining the travel documents went smoothly however, the yellow fever shot for Joyce was a near oversight! We still did not get the original flight planned due to traffic and queues at check-in -a little too much stress at Entebbe airport for my liking.  Instead of a one hour flight we managed to get to Kenya over two flights via Rwanda and arrived at our hotel late at night dirty, exhausted but glad to have finally made it.  The next day was a bustle of appointments and travel between hospitals in Nairobi for Audiology assessments.  An unexpected visit to the neurologist in the afternoon followed with a speedy trip to Cardiology before they closed for the day and then on to a thyroid lab test.  We did not leave the hospital till 6.30pm and we left with very heavy hearts.   The neurologist diagnosed Downs Syndrome which we had had our suspicions about anyway.  It was the cardiologist report that changed everything.  Darius has two major holes in the heart among other problems with the heart.  The high blood pressure has damaged the lungs and he was beyond surgery even in Kenya.  The nearest hospital who could perform the surgery was India however, the risks of death from sedation and surgery are of such a high risk in his situation.  The next morning we saw the ear nose throat specialist again (the main reason we had come).  He called the cardiologist from his office while we were there to get the update and we knew it was not good.  He proceeded to inform Joyce about the severity of his heart problem and the realisation that it doesn’t really matter about the ears anymore.  Darius has moderate hearing loss and could probably benefit from having tubes drained and grommets inserted, however sedation is too dangerous for him now.  Joyce seemed to be coping with the news better than I was.  She has grieved and cried for Darius for many months and I guess I was just starting to at that moment.  We flew back that night and arrived at our house in the small hours.  Darius just happened to have gone under sedation a few weeks before for an eye examination at a local hospital.  Of course if we had known this then, he would never have had the examination but it went fine.  Due to the nature of Nystagmus Darius’ eyes move continually which makes an examination very difficult unless sedated.  After four hours sleep we got up and went to the hospital now in Uganda to get the eye results.  We were there from 7am till 2.30pm emotionally drained and very tired.  Normally they would not have given him glasses for some months yet however due to the new information on his heart Darius left the hospital with his new glasses! It was a little bit of positive news after a very difficult week.

Darius enjoying the beard.....yes Andy has a beard!

                So what now?  I talked with Joyce and asked her what she wanted to do - how far was she prepared to go? Do I write to surgeons in the UK?  Do I see if a charity can support them both and the operation? I am blessed to have some “medical” friends from the UK living near me and was able to sit with them and chat about all the options once they had viewed the medical reports and scans.  We knew then that surgery was not an option.  The type of heart issues that Darius has is not a “one operation fix” but would be many and then subsequent operations each year.  It was such a blessing to be able to ask them all the questions in my mind and talk about the palliative care options now available for them.  We went to the “Mild May Clinic” originally set up for kids with HIV.  It’s a hospice for children and we met with the Ugandan palliative paediatrician there who will support Joyce and Darius when the time comes.  Another blessing was my friends were able to put Joyce in touch with a Ugandan palliative care nurse who speaks Joyce’s own language. 

First day of Grade 5, 3 and JK.

It has been hard for Joyce to explain to her mother and family what is going on with Darius as she does not know the words in her native language so this is also a great support to her.  So now we have a care network in place.  Joyce went to the village (4 hrs drive) to spent a weekend with her mother and talk everything through.  We will now work out a plan for the time when Darius starts to show symptoms of lung failure and support her the best we can.  Unless God intervenes and we pray daily for a miracle, Darius will have a short life.  It is most likely months, but Darius is not your typical heart defect baby.  He is strong and growing and eating well.  He does have a chesty cough at present and at times his erratic breathing scares me but at the moment he is relatively well and a contented happy baby.  So we walk this journey together with Joyce not knowing what each day will bring.  We do know that every day as a Christian brings us all one step closer to heaven.  Joyce is keen to stay working and myself and the kids are now getting into the new school year. 

Last Sunday I led the church in worship and we sang “Because He Lives”.  The third verse was always hard for me to sing as my dad sang this minutes before he entered glory almost three years ago.  Now, also the second verse has deep meaning for us as well as much comfort (I should mention the first verse is wonderful too :0).  Although one day Darius will be in Heaven, I grieve for Joyce and I grieve for my kids as they will experience unimaginable heartache too.  We are all relying on God’s strength daily and appreciate your prayers for Darius and Joyce.   Every day is a blessing and another opportunity to snuggle this adorable baby before he gets to see AND hear Jesus -  and for that we are all so thankful.

How sweet to hold, a new born baby

And feel the pride and joy he brings.

But greater still the calm assurance

This child can face uncertain days because He lives.

Because He lives, I can face tomorrow

Because He lives, all fear is gone

Because I know, I know He holds the future

And life is worth the living just because He lives.